Saturday, April 17, 2010


A beloved relative died last week. She's technically not "mine" anymore, though it's difficult not to think of her as related. She had a way of showing up at just the right time, bearing potato salad or spinach salad for myself and someone else, or introducing my kids to "hot dog soup" -- which has become their all time favorite quick meal. She once hung a shopping bag off the front door knob, with lovely jammies for me inside it. It was just because she knew exactly what it was to be in my shoes - missing my very busy med student hubby, on a tighter than tight budget, mom to a bunch of little kids. She brought her world famous enchiladas to someone's graduation dinner. Too much going on, trying to make that weekend a great one, and I just never did sit down long enough to get to the enchiladas, though I'd been drooling a little at the thought of them since she'd offered to bring them months before.

She commented to me once that watching me with Q was like watching one-to-one nursing care, 24/7. She was suspicious of Veggie Tales ("Can talking vegetables really be a good influence on young children?" Ha!) and unfailingly gentle and engaged with little ones - loving on Q and getting him to burble to her, and bringing toddler G the Good Dog, Carl book when she realized that he might be afraid of their large dog. We loved that book, just about to pieces.

I so admired her for who she was: a fierce mama to her kids, whip-smart, wickedly funny, kind, insightful, a touchstone for her husband, a loyal and attentive friend, widely read, loving, and able to throw snark with champions. It seems brutally unfair that such a person should be gone from her family, her life, from the lives of the people who loved her so. I'm sad and fairly weepy.

I have good stuff to share about the more current doings here, but that will have to be later. We've such cool things happening at church this weekend, and I've got to go blow my nose a few more times before hitting the sack so we can be ready for the morning. For goodness sakes, love on the people you find to be important to you. Really.


Saturday, April 10, 2010

Ups and downs

So remember how I'm not freaking out? I may need better skills in that area. I've been looking at houses, working on getting qualified for a creative loan situation that would be augmented with grants from a county program that works to help families which include a member with a developmental disability to own their own homes. The idea being that it's nearly impossible for families to achieve this when often one parent really must not work in order to accomplish what must be done to keep the group on the rails, especially in the case of the person who is disabled. (And trying to communicate this to the general public can be nearly impossible.)

I'm wondering if I just should not be contemplating this. I've run a gazillion budgets and they work. It would be tight, but we could manage if I can find that miracle house - a foreclosure in good shape with lots of room, perhaps even with some modifications already present, at a low enough price to make the payments about half of what I'd "qualify" for (can we say Dave Ramsey?). I thought I'd found one that met that criteria, including exterior ramps and a room that could potentially let me work two or three hours a week from home, but it already has an offer on it. If I had an extra hundred thousand floating around, there'd be no problem finding a perfectly adequate house, but my price range throws a monkey wrench in for sure. Of course, even then, the chances of not needing to modify bathrooms, etc., are pretty slim.

Other things that make me go hmmm about all this? It seems crazy to try and be in a house away from other adults, given that the kids aren't exactly ready to leave home yet and Q sometimes needs supervision just so I can shower. What if I get sick? What if for some reason I needed to carry the entire monthly budget myself? I could stop driving places, then scale way back by cancelling everything but groceries and utilities. Of course, on can't cancel a mortgage. What if, what if, what if...

It's making me a little crazy. In part because - good news! - Q's well on his way to getting his potty system. The letter from the pediatrician has arrived at the therapy unit and will soon be on it's way, along with another ream of supporting documentation, to the pharmacy. And then we wait. And look for some way to fit it all in here, or find a place that can either fit it into an existing (probably modified) bathroom, or can be easily and inexpensively modified to make it so. Also? I'm ready to look at acquiring the rolling base for his bath seat. He's nearing 35 pounds and is quite the slippery fish when he's wet. It's getting harder to wrangle him in and out of the tub. But then I need a place to use that rolling base...

I think you see how this loops. It's a hamster wheel in my brain and I'm about at my wit's end. I'm seriously thinking about keeping the kids and I on some sort of "European Traveller" wardrobe plan. In other words - your collection of clothing consists pretty much of what you can fit in your (not tiny) backpack. Coordinating neutrals, baby. With maybe one nice red sweater thrown in. Two, maybe three pairs of shoes, max, including espadrilles and hiking boots. And viola - we'd fit happily into a veritable crackerbox. As long as it has windows and more than one bathroom - so I can get one fixed up to accomodate Mr. Q. Of course, this version of The Grand Plan falls apart when I remember the amount of laundry that Q generates all by himself and that I don't currently own a washer/dryer set. And that washer/dryer sets cost, you know, money...

About the other equipment Q needs - now I'm wondering how we'll manage to nail down the communication device in a timely fashion. So much of Q's developmental needs are defined not by what will best suit him, but by what can be justified to the insurance folks or how we need to time the requests for the expensive items in order to get a positive response. This galls me no end. For a kid who seemed to identify colors and letters last spring/summer, we sure aren't any closer to pulling off a device for him to keep at home, much less one he has access to for more than minutes out of a week. Even then, figuring out which particular thing will best suit him is sort of agony. Are his fine motor skills at their peak today? That indicates option A. Are they lacking today? That indicates B. How about head control? Good? Option C. Not great? D. Awful? E. Eye gaze - tracking good? F. Tracking hard to obtain/sustain? G. How vocal is he? H? I? J? Can he approach the midline with his hands/arms more or less than at our last visit? K, L, M, or option WW, perhaps. And will you be able to build your own flibberty-dooble attachment to go with your eventual choice of $20K equipment? If not, you should consider our triple A model. And good luck getting that covered, because it may or may not be something that applies too broadly for use by the general public. Touch screen computers, while roughly one thousandth the price of the specially designed speech equipment, are therefore disqualified. Boggles the brain, really.

Not that an iTouch or iPad (or the ilk) would remotely answer everything that the big shiny boxes of words do, but if the big and shiny is out of reach, then the less expensive option should at least be considered, for crying out loud.

Anyhoo. I'm frustrated and probably in desperate need of a run. I'm feeling that thing - about being in charge of outcomes where I don't really have say in the process, just the accountability for the eventual result. It's kind of enough, already.

Q's out so I'm heading to bed so I can increase my odds of having a shower before church in the morning. Hope your prospects for a truly, down to your soul, restorative weekend are good and getting better. Enjoy. XO.

Saturday, April 03, 2010

Head banging

Where to begin? Q needs some expensive stuff.

The list:
A sort of mobile walker/stander/supporter thingy that allows him just enough movement so he can get into trouble (as any four year old would like to).
A potty system (he's dry over most nights) that supports him sufficiently in a good position.
A "voice" - via an augmentative communication device of some sort which is likely to be about $17,000 all by itself.

I would dearly love to also have some sort of bike trailer that converts to a good jogger/stroller. It's tough to run with Q in his Bingo - the poor thing shimmies badly on the slightest variation in a surface.

So I'll leave you to contemplate this part. There's more, but I'm tired as well as stymied so I'll be back to discuss further.